In it's most extreme form, fear:
- empties life of it's quality and joy
So how do you handle fear? Here are some ideas.
1. Learn as much as you can. At the beginning of your journey, this can be overwhelming. Not only is there information about whatever disease you are dealing with, the health care system has it's own language, and probably you don't speak it. There are forms and processes and medications and protocols. Ack! Too much. Read what you can about the disease, and make notes. If you don't understand something, write it down. Later, you can...
2. Ask questions and keep notes. With doctors, it is best to prepare as many questions as you can think of ahead of time, and then prioritize them. Nurses are also a great source of helpful information, and may be more willing to spend time with you. If a word comes out in conversation that you don't understand, ask. As time passes, you will begin to get a picture of what is happening and your options. You will come to a place where you can make better decisions.
3. Find a friend. Another care partner is ideal, as you can share your journey. However, what you need is someone who will be willing to listen when you need to talk. This can be anyone. Even if they don't know what you are going through, a compassionate friend who will let you vent is a valuable resource. You aren't looking for answers from them, but support and comfort.
4. Realize there are many things you have little control over. Medical changes, cognitive changes, and the dreaded "what happens next?" are all out of your control. Spending your precious energy worrying about tomorrow and what it may bring, is foolish. You can't change it by worrying about it, but it can change you. If you dwell on what might happen, you might miss what is happening today. I'll say it again--focus on today. You have today with your loved one. Look for the joy in what you have.
5. Being a care partner can be all-consuming. Even when you aren't with your loved one or dealing with things that involve them, you're thinking, thinking thinking. You are trying to solve problems in your head and worrying and thinking some more. The reality is, though, that some day you will have to say good-bye. Not only will you no longer have this all-consuming job of care partner, but you will not have this significant person in your life any more.
Probably you don't want to think about this. You should. Spend some time today thinking and praying and planning for that day. For today, make sure you say all the things you want to say while they are alive. You have this opportunity. Take it. Then, spend a little time thinking about what your life will be like when they are gone. Make a plan, even if it's only partially defined, of how you will spend your time when your role as care partner is over. I have seen people who have no idea how to live their lives when the person they gave every minute to, is gone. Don't make that mistake.
Without realizing it, you can allow fear to steal parts of today that should never be his. Recognize that possibility, take control and take back today, and tomorrow.